When one or more of your children has special needs, the job of the custodial parent is especially difficult
Of course, each family faces unique challenges, and I don’t want to generalize. Instead, I will tell you my story:
I’m the custodial parent of twin pre-teen boys, and one of the twins is classified as “special needs.” I’m lucky that my ex provides financial support because therapy and medication can be expensive. Especially when you learn, as I just did, that a crucial provider is out-of-network and your kid’s health insurance policy has a $15,000 deductible!
I’m also grateful that my ex appreciates the time burden that goes along with being the custodial parent. He acknowledges that I’m the one who takes our boy to doctor appointments, picks up his meds, and fields the calls from the school. He’s, of course, aware that I’m responsible for the daily morning task of waking up our son and getting him ready for school on time.
I believe he understands, intellectually, that it’s a really hard job. But because he’s not here when my son has a bad day (or a really bad day, as has been the case lately), he can’t begin to know what kind of emotional toll I pay as the parent-in-charge.
No, I’m not saying that parents of typical children have it easy
I want you to understand that I’m not discounting the struggle of raising typical children (translation: not special needs). Whether you’re married or single, raising kids is unlike any other job you’ve had.
From the time they’re babies until the moment they leave the nest, our kids inadvertently deliver various challenges that correspond to their specific stages of development.
And some kids are easier than others (this is where I wave to my mother and remind her how easy she had it with me).
But when you don’t know if your kid is going to make it through the day because of panic and anxiety – and you’re not sure if the school staff can best serve his needs – there’s a whole other layer of worry that’s shakily balancing atop the rest.
The quick run-down about my special needs son
Noah and his twin brother were born seven weeks early. The smaller of the two boys, Noah has struggled more than his sibling from the start.
Over the years, Noah’s been diagnosed with Sensory Integration Disorder, OCD, ADHD and, finally, NLD (Nonverbal Learning Disorder). His hurdles include anxiety, panic, impulsivity, impatience, and poor executive function skills. But anxiety appears to be the underlying cause for most of his struggles.
Noah is also emetophobic, which means he’s afraid of vomiting. He’s so fearful of becoming sick that he begins to panic at any sign of stomach upset.
A couple of weeks ago, Noah felt his tummy rumble during fourth period at school. From that point on, he began to experience near constant panic attacks, and he couldn’t make it through his classes. On one day, he threw a glass candle jar across the room in frustration. The next, he was rolling around on the floor, moaning, and slamming his hand down on desks and walls. The school couldn’t support him while he was in that state of mind, so he missed almost a full week.
“You’re only as happy as your least happy child”
We’ve all heard that expression, and it rings true. Now, imagine that you’re the custodial parent of a child who’s undergoing Noah’s degree of panic. The worry and sadness stay with you all day and keep you up at night. You wonder what you should do – what you CAN do – to make it better, and you feel helpless and inadequate when you realize what you can do is not much.
If Noah has a couple of good days, my relief is palpable. My day feels brighter and I can breathe. When he wakes up in a panic, I start to feel sad and helpless once again.
Last Wednesday was one of those bad days. Noah was so afraid of being sick that he was nearly hyperventilating during the short car ride to school in the morning. I felt frustrated and angry, so I lashed out at him. He began to cry because I was so unhappy, and that made me feel even worse.
When I pulled away from the school, I couldn’t hold back my own tears.
Is this just a rant about being the parent with the extra burden?
There’s a little bit of that, yes. But the reason for writing this goes beyond my envy of their father, who’s afforded the luxury of less worry throughout the day. That’s not a dig at him; I know he cares deeply for his son and is concerned about his well-being. It’s just that he doesn’t have to live it, day in and day out.
I decided to write this because I want to encourage custodial parents of special needs children to do some extra work in the area of self-care.
When I returned home after that tearful ride back from the school, I wiped the tears from my eyes and did these things:
- I sent an email to Noah’s social worker to inform her of Noah’s morning struggle. Then, I asked her to make his teachers and aides aware of his state of mind. I have developed a close bond with the social worker, and that has helped me to feel more confident that the school is supporting my son’s emotional needs.
- I played Words With Friends on my phone. That was a useful distraction and I was able to shift my focus away from worry.
- I ate some breakfast. Nourishment is vital.
- I put on makeup and got dressed.
- I planned what I was going to accomplish during the day.
These little self-care actions made me feel stronger. I needed to feel like I didn’t have to hold on to the entire burden of caring for my son, and that my own needs were important. Then, I forgave myself for lashing out at my child and made a promise to myself to work to remain calm throughout the day.
What you do to treat and empower yourself is an individual choice. But you must do it. As the custodial parent of a special needs child, you know that the path to emotional well-being requires planning for a marathon, not a sprint.
Anything you want to vent about? Please share in the comments. Also, let me know what you do to take care of yourself.